Wednesday, November 09, 2011

Several months ago... OK, almost a year ago, I revamped my silviaskingdom.com website and substituted the entire content with a BLOG style website. It was a crazy move, but one that was way overdue. While most of the content will most likely never again reappear (content included old pics and old updates on the kids, and also American Idol & B&B recaps, wallpapers, icons and incredimail letters), I wanted to switch the reason for the website to a more personal one. I have a different blog at Caringbridge for Nicky's updates and my blog @ sleepingangel.com is for my graphic design, so I can concentrate on my books and my EB awareness ventures on my personal one.

Sunday, May 29, 2011

Ever since losing Alex at full term back in the dark ages of 1995, I've been looking for stories of other bereaved parents who might have shared their stories in books. I became particularly interested in celebrities that have had losses, but much to my dismay, none had written autobiographies. I purchased the book of the biography of Jackie Kennedy once because I knew she lost a baby at birth-the same year her husband was assassinated, but I didn't realize this: there is a BIG difference between biographies written by a third person and autobiographies, written by the person him or herself. This biography of Jackie was great at giving 'dates' and what happened and what not, but did not really delve into the feelings, on what happened to her psyche. How in the world did she cope when within six months she lost her child AND her husband? This is the reason why I am obsessed with biographies, I've always been interested in finding out how people coped when life gave them lemons. Gigantic lemons.

Just recently, as I am writing Alex's story for the book I am writing about Nicky's life, I did more research for celeb's autobiographies to see if I could find some gems previously unreleased. While I did find a few released since 1995 of other moms who speak quite generously and eloquently about it (and I read those books in record time!), still, celebs who have had stillbirths are rare, but there are a few that I WISH would share their experiences. I know, how selfish of me! LOL. Probably the most notable in recent years has been Katie Segal, whose pregnancy had been written in her show Married with Children, and when she lost the baby they had to pretend Peg's pregnancy had just been a "dream". Common Katie, we want to know more. Another famous celeb who lost a child at the 8th month of pregnancy was Keanu Reeves' girlfriend Jennifer, and Jennifer herself died in a car accident two years later. I am dying to hear a father's point of view. I did get a morsel of his feelings in an article I found online:

“Grief changes shape, but it never ends. People have a misconception that you can deal with it and say, ‘It’s gone, and I’m better.’ They’re wrong.

“When the people you love are gone, you’re alone. I miss being a part of their lives and them being part of mine. I wonder what the present would be like if they were here—what we might have done together. I miss all the great things that will never be.

“Damn it! It’s not fair! It’s absurd. All you can do is hope that grief will be transformed and, instead of feeling pain and confusion, you will be together again in memory, that there will be solace and pleasure there, not just loss.”

“Much of my appreciation of life has come through loss,” he said. “Life is precious. It’s worthwhile.”

Common Keanu. Autobiography please.

Did Oprah write an autobiography? There are so many out there about her, but not sure which one she wrote or which one she speaks about the baby she lost.

So... in the end I did find a couple of books, autobiographies of "celebs" (although I didn't exactly know who they were prior to my research, but it's okay) that speak about their losses. Here they are:

Kym Marsh is probably unknown to most people in the US, but she's probably a well known name to the Brits. According to wikipedia, she first came into the public eye in 2001 after appearing as a contestant on ITV's talent show Popstars where she made the final line-up for the band Hear'Say along with four others. Marsh left the group in 2002 and now plays Michelle Connor in the long-running soap opera Coronation Street. On 12 February 2009, Marsh released a statement announcing that her son Archie had been born 18 weeks early on 11 February, and had died moments after birth. Her book recounts her difficult childhood, her raise to stardom and the death of her son.

Katherine Graham was an American publisher. She led her family's newspaper, The Washington Post, for more than two decades. She has been widely described as one of the most powerful American women of the twentieth century. Katharine had to endure the stillbirth of her first child, and several subsequent miscarriages.

According to a reviewer, she does speak of her losses in her memoir, and I do hope she speaks candidly about it, she does have 642 pages to do it! This book is next on my list to get.

This is the book I am reading right now, "Life Touches Life" by Lorraine Ash. I love it because her story is eerily similar to mine. Gives me the chills just to read it.

Another book I just finished is the one below from Elizabeth McCracken, 'An Exact Replica of a Figment of My Imagination". Very neat title, the story though is hard to follow at times, but it's okay, it jumps around from the pregnancy she lost at full term (once again, very similar situation as mine) to the pregnancy a year later where she gives birth to a healthy baby.

I have a few more in my 'wish list' but I will need to read more about them before I get them. I have very little precious time to read and I alternate these grief books with autobiographies just as not to get too depressed, but my next autobiography is

Mackenzie Phillips, so I am not sure how cheerful that book is going to be!

One more note about grief in general before I end this. For years now, since Alex died, people have told me 'God does not give you more than you can handle'. Please everyone, stop saying that to me or to anyone. It's simply not true. After Alex died I remember going to the newslist alt.support.grief and I read TWO posts at a couple of months distance where mothers whose children had died committed suicide to go be with their babies. God gave them more than they could handle. I stopped reading posts there after that because I simply could not handle it. There is also a story in my family that deserves to be told and I recount the details in my book, but I will mention part of it here just to help people understand what I am trying to say.

My grandpa had an older sister, Maria Corradin, who married a wealthy farmer and they had 4 boys. In 1919 the whole family was infected by the 'spanish flu' (which killed millions around the world) and in a matter of WEEKS my great-aunt Maria lost her husband and all 4 of her boys. When she came home after the last funeral of her oldest son, she went 'numb'. I researched this and what I surmise is that she either had a psychological shock or suffered an acute post-stress disorder of some sort and while she could do the "basics" of eating, dressing etc, she was unresponsive otherwise. She lived well into her 90s and died in the late 1970s, so she lived 55+ years in a rest home, unable to fetch for herself. God did give her more than she could handle.

I understand WHY people say that, they want to give people some imaginary strenght, ohhh 'you can handle it, chin up', but while I am certain it's meant to encourage and it's given with the best of intentions, it's almost a dismissive statement. I love THIS BLOGGER for example, who explains what's really in the bible.

I think a better way to express the sentiment that people are trying to get across with this is something more along the lines of, "God won't abandon you in the hard times" or "God is still with you." Really though, even better is just to let someone know you are there for them, offer your help, and listen to them. The people I have appreciated the most in hard times have been the ones who said the least, usually. They were just there for me.

Tuesday, May 03, 2011

I should be studying for my Math Test tomorrow, but instead I am sitting here with too many thoughts in my head to concentrate, so maybe if I write them down I can make room for math in my brain? Ha Ha. Nobody reads this blog anyway, so, whatever, it's a good brain excercise.

My little Precious Prius (which I love, yes, Nick, I do, thank you) had a little problem with the battery (long story... moral is, if you have a hybrid, make sure all doors are always tightly closed! One of the doors got left "barely" ajar which completely drained the battery-sigh) and I got a chance to have a nice chat with the tow truck driver, which gave me a ride to the dealership, and to this nice man who gave me a ride back home and then a ride back to the dealership to pick up my car when it was ready today and I realized something. I have nobody to talk to. Seriously. Both the tow-truck guy and the driver for the dealer were so engrossed about my story about Nicky's EB and Greg's strokes and everything else in between, I mean, am I THIS lonely to struck conversations and tell my life story to complete strangers? I remember when I used to work at Babbage's and certain customers would come in very often just to have a chat with me and I often thought they were probably very lonely people. One particular customer took me out to Sushi after work even just to be able to talk to me more about his problems getting his new wife back to the US from China and more about his life story. Have I become one of these people? Hmmm... I think so. I am not alone, but I am lonely, that's for sure. Oh well. That is what I get for having lived in two different countries and in 4 states, I have friends everywhere, but not here, and I do mean friends you can go out with for lunch or for a drink. I was telling mom I have no shortage of friends per se, it's just that NONE of them are HERE. It's okay, I'll muddle through, not complaining at all, just stating matters.

I found that lately when I get mad about something, I go write in my book. It's extremely self-therapeutic. If I get mad is because apparently it strikes a nerve, which brings up a memory in my life, and so it goes. Speaking of which.. I cannot WAIT to talk to my dad about this Osama Bin Laden deal and get his prospective on things. My dad, which I respect and adore more than words can say, was a 15 years old teenager in Italy when World War 2 ended and Hitler committed suicide and Mussolini was executed in 1945. I am quite appalled to be honest when I hear people comparing and equating Al-Quaida's happiness when the twin towers got hit with Americans being happy when they heard Osama was killed. Frankly, I don't see the comparison at all. It's like comparing the Japanese being happy when they bombed Pearl Harbor and everyone being happy when Hitler died. The two 'happiness' can't truly be compared because one is a happiness out of pure evil, while the other is from eradicating evil. I really want to ask my dad if anyone in Italy was 'sad' that Mussolini died... I get a feeling he'll have a good, hearty laugh!! My dad is uber-political, and I find it interesting how, even though I never even knew what 'party' he belonged to (and in Italy in the 70s they had 30 or so parties!!!) when we compared notes in the late 90s I was definitely my father's daughter. Then again, having been born and raised in Europe does bring me a certain prospective on things that cannot be easily explained, just lived.

Okay, I think my head is clearer now. Bring on Factoring Out Equations! Ick.

I counted 153 roughly. These letters were on that site but since the revamp I had to take them down, so this is the easiest way for me to make them available once again to everyone. The image I made shows a bit of the preview of my work.

The only ‘Thanks’ I ask is if you follow and LIKE one of my two Facebook pages, the first one EB Info World deals with news, awareness and support for my son’s disorder, Epidermolysis Bullosa. The second one is for my AVON business, if you don’t have an AVON lady yet, please let me be yours! I had to quit my job to take care of my family full time and every penny helps. By liking my AVON page you will be the first to find out about new deals and freebies.

Thursday, March 31, 2011

Sunday, March 20, 2011

Okay, sure, my 47th birthday is just around the corner (yes, I've never been one to hide her age, bring it on!), but I sure never expected to see things I own, or that I remember clearly, in a museum.

But, I digress. I wrote about our trip to Stanford in my blog at Caringbridge (you can read it here http://www.caringbridge.org/visit/nickyz ) and how we were all of a sudden left with a whole day to do... nothing because they cancelled Nicky's surgery. If it would have been a great sunny day, I would have taken Nicky to San Francisco or the beach but it was raining cats and dogs so I felt doing something indoors would be more appropriate. I googled museum on my iPhone and the Computer History Museum popped up, just a few miles from the hotel, and it looked like it had a video-game section, so Nicky was sold. When we got there the clerk told us that they were having some 'glitches' today and the entrance would be free. Glitches? I noticed none of the monitors were working, monitors that usually have some mini-documentaries playing throughout the entire exhibit so I was a little bummed, but the glitches were fixed within the hour, so then we tracked back. What a cool place!!!

﻿

This gadget here caught my attention. It was a programmable calculator made in 1965 by a company called... drum roll please... OLIVETTI! Yes, Olivetti is the 'main' company in my hometown of Ivrea in Italy, my dad worked for Olivetti for 50 years! This calculator was the first of its kind because it had the ability to store programs and data on magnetic strip cards. It was the very first calculator that was also a computer of sorts, it sold 40,000 units! I need to ask my dad if he remembers it when I talk to him today.

You will never guess what this silly looking thing is. In 1969 Neiman-Marcus offered this 'kitchen computer' in their Christmas catalog! For $10,600 you got this computer, a cookbook, an apron, and a two-week programming course. It had a built-in cutting board and it came with a Honeywell 316 minicomputer. The interface consisted in binary switches and lights. None were sold, LMAO!

In the early to mid '90s I was a manager for a computer software and videogame store called Babbage's (only a few stores survived the merges) and I remember having all of these software packages on my shelves and explaining to people what 'Windows' was. Isn't that crazy?

The history of PAC-MAN. Nicky basically "parked" in this section of the museum, they had areas that explained the histories of some of the games and they had in display every videogame system ever made! They even had games you could actually PLAY, so Nicky loved it. While he soaked all of this up I roamed around the museum looking at what he considered 'boring' stuff such as the computers made for NASA, Mainframes, old calculators, old punchcard machines and tons of other amazing stuff. I was completely fascinated to look at these old looking things and calculators as big as a room. I actually spent quite a bit of time in the 'Internet' area. They had a slideshow of website's main pages as they appeared in the 90s. Sad part is, I remember all of them! Sigh.

In the gift-shop I spotted Computer Engineer Barbie. LMAO!

Later at Target I spotted "Kitty Care Vet" Barbie and "Pizza Chef" Barbie. Didn't realize they were making all there Barbies nowadays! I have boys so I am completely out of the Barbie loop I guess!

On our way back home, passing through Gilroy, I stopped at a little Farmer's Market to get some fruit and I asked Nicky if he wanted to try Garlilc Ice Cream. Uhhh... no. Even I passed. I will try anything but even I had to pass on this one!!

The last stop was at Casa De Fruta, we love this place. I took this pic here, don't they look delish?

Photography and Photoshopping is really helping me right now so I am doing more and more to help me get out of my funk. I know that if it wasn't photography it could easily be food, or alcohol or drugs, so I try everything I can to stray from the obvious ways people react to severe depression by doing something I love, even if that means the laundry gets backed up or whatever it is does not get done. Nicky's EB is taking it's toll on him and me more and more as it has been for the past 14 years, Greg's recovery is slow and frustrating as heck, his mood is really awful at times and even Connor has problems at school, he told me the other day reading to him is 'torture', which would explain why he's failing reading and his teacher and principal are considering retaining him and make him repeat second grade. It may be my fault, I don't read to him enough, I wish I had someone, anyone, that could help me with him, I feel as though I am so busy with everything else he's left behind. Even though I am having a hard time keeping up with my school work (mainly for my math class), dropping any of my classes, as my husband suggested, is completely out of the question. It's the only thing nowadays I look forward to. I look at other people's lives and they seem so simple, their gripes are so minute compared to the burden I have to carry every single day, a burden I did not cause. I have questions for God, tons. I don't really ask 'why me', as there are plenty of people dealing with children with health issues, I just wonder why he had to throw Greg's enourmous health issues in my lap as well. Don't I have enough on my plate? I spend so much time changing bandages and taking care of Nicky's needs that many times I am left with very little time to take care of Greg's and Connor's. I want to be the best mom I can for him, I try so hard to do everything for him, but there is only one of me! THERE IS ONLY *ONE* OF ME! I can't do it all! Why God? WHY???

Tears are streaming down my face and it's a good thing. I've been trying to cry for the past several days without success. Thanks for listening and thank you for letting me vent.

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About Me

I am a 47 year old mother of 3 boys, one in heaven and two on earth, ages 15 and 8. My 15 year old suffers from a devastating and painful disorder called Epidermolysis Bullosa. More info in my links below.
I don't have enough time to do all that I'd like to get done...ever! Just plugging along, raising my kids, going to school, updating my websites, facebooking, scrapping, photoshopping and trying not to fall too far behind on the laundry!!